Caregiving Chaos: Adults Who Don’t Plan for Care

By Pamela D. Wilson, MS, BS/BA, NCG, CSA

Caregiving chaos results from older adults and caregivers who don’t plan for health and care needs. We live in a world of rose-colored glasses. Little thought is given to the effect of health on aging. No one asks what happens when we become ill or frail. The result of no plan is caregiving chaos when an aging parent becomes ill or suffers a serious health incident.

We don’t financially plan to pay for care. We don’t plan to create legal documents to allow others to make decisions for us when we are unable due to poor health or a tragic accident. Financial plans, power of attorney documents, and a healthcare plan are important to ensure the care we desire is the care we receive.

Don’t Leave Life to Chance

Older adults leave life to chance. Aging parents expect family or friends to pick up the pieces when caregiving chaos occurs. Parents expect adult children to provide care but rarely ask prior to care becoming a need. Caregiving is assumed. Unrealistic expectations exist that family will rush in to solve chaotic caregiving situations.

Individuals believe that Medicare pays for everything. Trust exists that the government will take care of us when age. The assumption that a monthly social security check will pay for all retirement needs is results in caregiving chaos when costs of care are realized. Caregiving costs have skyrocketed. Six percent or more annual rate increases for in home care and care communities make long term care insurance attractive.

Faulty Beliefs: The Future is Years Away

Older adults and caregivers don’t plan because there is a belief that time frames and events are far into the future. Caregiving chaos happens in the blink of an eye. Common thoughts are:

• I’m not retiring for 30 years, why start saving now?• Only old people need a power of attorney or a will; I’m not dying for years.• Heart disease or diabetes, not me—give me a Double Whopper®, large fries, and an Oreo® chocolate shake. Why not have what I want now?

We live for today and fail to realize that today’s choices equal the quality and enjoyment we experience in our retirement years. Where we will live, the quality of our health, who will provide care, if needed, depends on the plans we make for ourselves. These plans include health, planning for care and caregiving needs, financial planning, and legal planning.

Always An Excuse to Avoid Planning

How many excuses do we make for why we don’t plan? Too busy? No time? Low importance? Fear that we may appear stupid? All of the common cliches: the best laid intentions, Benjamin Franklin’s quote a penny saved is a penny earned, life is filled with good intentions, and the idea of procrastination, as described by Parkinson’s Principle, guide our daily choices.

There are many situations in the news of people who did not plan. Research Terry Schiavo, Karen Ann Quinlan, Nancy Cruzan, and Charlie Gard. Celebrities fail to plan. All of these families faced battles that resulted in caregiving chaos with the healthcare system and the courts. Both Prince and Aretha Franklin died without wills proving that none of us expect to die.

Those working in healthcare see the future and even then we don’t plan. We see the physical evidence that bodies age and become frail.

How do the financial, legal, and healthcare industries collaboration to avoid caregiving crises and deliver solutions? What steps must be taken? What changes in thought patterns and discussions must be embraced?

Caregiver Worry and Stress

Caregivers, do unexpected situations throw your life off balance? Are you in a constant state of stress, anxiety, and caregiving chaos over family disagreements about care? Do you feel so overwhelmed that you are frozen, unable to move forward. You feel anxious about making any decisions because you worry about making the wrong decision?

Are you worrying about taking care of yourself and your family? What happens when care needs increase. Where will you be tomorrow, next week, next month, or next year?

Caregiving doesn’t get easier. Care needs increase and caregiving becomes more difficult. Stress increases. Does caregiving have to be this difficult? No, but only if you choose to plan.

Caregiving Chaos

Caregiving is not a role we plan for or consider until the midnight phone call and a visit to the hospital emergency room occurs to meet an aging parent. Or we hear a loud thump in the night and find our husband or wife on the floor writhing in pain. Result: a broken hip and caregiving chaos. We do not plan to age. We do not plan to caregive.

And unlike financial or legal planning, there are few family discussions if any about caregiving before the need. Each caregiving situation has similarities but many different aspects. There is no single solution for every situation.

Learning to caregive happens through experience, like being thrown into a swimming pool and expecting to rise to the surface and swim. Unless parents took care of their parents and young children were involved, family exposure to caregiving is limited until the time comes to caregive.

Caregiving Research Paints a Difficult Path for Caregivers

Research about the effect of caregiving on the caregiver is telling. Caregivers become more ill than the person for whom they caregive as the result of daily stress, emotional anxiety, and physical support. Caregivers for persons diagnosed with dementia are under the greatest amounts of stress. Providing hands on care results in greater stress levels.

Caregiving is a noble effort, a duty, and a responsibility. Positive feelings result from caregiving. Family relationships improve and may become closer.

There are also negative effects from the role of caregiving. Poor physical health and diagnosis of chronic health conditions. Declines in emotional health, self-esteem, and confidence. Risks to the financial future of caregivers when changes in employment occur. An inability to save for retirement, purchase long term care insurance, or plan for care for the caregiver.

How do we balance the duty to caregive with the risks of caregiving? Solutions are taking positive actions to arrive at solutions, increasing confidence levels about caregiving decisions, and collaboration with a variety of care partners.

If We Fail to Plan, We Plan to Fail

Let’s start with examining life struggle so we can arrive at the life we choose. Wouldn’t it be a dream to enjoy the simple pleasures of life without worry?

Two theories exist, one about delays and procrastination and the other a negative view that things will always go wrong. Believing one or the other is easy when we allow life to lead us rather than planning and leading our own lives. We have a choice.

• Parkinson’s Principle: “work expands to fill the time available for its completion.”.• Murphy’s Law: “whatever can go wrong will go wrong.”

Parkinson’s Principle is that idea that if deadlines do not exist, work is delayed until the very last minute. Term papers and completing homework are examples. A deadline exists. Few plan ahead to avoid rushing at the last minute? Of course not. We leave the project until the last minute and finish at midnight.

Unless there is a sense of urgency life takes over and we feel out of control. Caregiving chaos is the result of thinking about, but not having care discussions. The result of thinking about healthcare, financial, and legal planning but not acting.

Murphy’s Law is a belief that things do and will go wrong. While things do go wrong, maintaining this belief creates a self-fulfilling prophecy that things will go wrong. Making and accomplishing a plan results in confidence. Things begin to go right.

The above two theories, while accurate in some circumstances, may give the impression that life is against us. Life does not have to be a constant struggle or a battle. The glass is half full. The glass is half empty.

Constant struggle results only if we believe this is how life works. We are not powerless in creating our lives and in managing our health. We are powerful. Our thoughts and actions create our daily life. Thoughts without action to plan for care needs result in caregiving chaos. The time to act is now.

Avoiding Caregiving Chaos: Creating Life by Choice

How do we create a life that is for us, not against us? How many of us dream of a life that runs smoothly with occasional bumps in the road that don’t throw us off balance. We begin by looking at reality and then move forward. We only receive so many taps on the shoulders from the universe or our angels that it’s time to act. Time to pay attention. Time to plan.

According to Brian Tracy (1), research confirms that, less than 3 percent of Americans have written goals, and less than 1 percent review and rewrite their goals on a daily basis. It’s no wonder we live in a world that seems filled with chaos.

Individuals who choose to plan and guide their lives toward the positive, are people who live by a different set of values and principles. Self-discipline supports the focus to be able to achieve short- and long-term goals. Immediate gratification is delayed. The need to have something today instead of something nicer tomorrow becomes less important.

Positive thinking and faith become a pattern of daily life. Persistent and daily effort results in positive experiences. Training the brain to think only good things and to believe in good takes practice.

Struggle results from blaming others. So many people fail to see their contribution to daily issues and problems. Negative beliefs and attitudes repeat and result in more negative situations.

Relationships with others may be difficult because of beliefs. Refusing to take responsibility to change a situation results in the repetition of the same issues and same situations until a different choice is made. This cause and effect relationship is sometimes difficult to see. We continue to make the same choices that result in the same frustrating outcomes. Until we choose or act differently, nothing changes.

Becoming Self-Sufficient

Creating a life of self-sufficiency gives confidence that we are able to cope with all of the challenges that come our way. Becoming self-sufficient and confident is a positive response to caregiving chaos.

Caregivers often feel worn out and exhausted. It’s not possible to add one more thing to the to do list. Caregivers avoid obvious solutions because of becoming stuck and unfrozen. Take this article and the video below as a tap on the shoulder that the caregiving journey can change. That anything is possible.

Check out this motivational video by Actor Will Smith about self-discipline and motivation. Time for a little tough love. Will Smith shares his beliefs about making better choices to create a positive life.

My mother, Rose, was my example of not blaming others and of taking responsibility. She never complained or made excuses about anything. Not having a negative pattern to follow instilled similar behaviors in me. If I wanted something, my choice was to find the how and the way.

Growing up in my family home there were no automatics. We lived in the Midwest and had what I call the Midwestern work ethic. Nothing was given. Hard work was the rule.

There was no car gifted at the age of 18. No agreement by my parents to pay for college. No fancy clothes or comparisons to what other families had that we did not. There was a sewing machine so that we could sew our own clothes. The basics of food, lodging, safety, and the character and ethics of my parents were the gifts we received. It was up to my parent’s six children to decide how to use these gifts.

Avoiding Caregiving Chaos by Going the Extra Mile

Along with a positive mindset, taking responsibility, self-control, and planning, making an extra effort in the right areas results in fewer chaotic caregiving situations. Navigating the care system can be challenging when information seems contradictory or there are no clear answers.Staff in hospitals and nursing homes are overworked and exhausted. Care communities take your aging parent’s money, but may not provide good care. Mistakes happen.

Caregiving chaos occurs because it is difficult to predict the unknowns lurking around the next curve in the road. Caregivers become stressed and are pressured to make rush decisions. Lacking confidence and experience, sometimes the wrong decisions are made.

Working Together Makes a Difference

Collaboration with aging parents, spouses, family members, and industry professionals reduces caregiving chaos. This collaboration takes effort that may involve placing egos aside and asking questions until a clear picture of the situation is provided. Empathy may be needed to validate the challenges of care staff to so that they provide the level of assistance we want for a loved one.

The old tale that “we catch more flies with honey that with vinegar” is very true and relevant to caregiving. Creating adversarial relationships or participating in caustic relationships has no place in caregiving. Creating unnecessary drama makes caregiving situations more difficult. Coping skills to manage emotions are positive and results in levels of increased confidence to manage caregiving chaos.

Healthcare and care staff are your greatest supporters. They can also be your greatest enemies. Take the high road. Be positive and pleasant to everyone. Find ways to work together that result in common and shared solutions.

Do What It Takes: Escape Stress and Enjoy Simple Pleasures

Caregiving is a “whatever it takes effort”. It is possible to leave the path of anxiety, worry, and overwhelm to arrive at the path where simple pleasures can be enjoyed with occasional bumps in the road. This path involves learning about the bigger picture of caregiving, being open to initiating change rather than being frozen in old patterns, and collaborating in a positive manner rather than reacting negatively to unpleasant situations.

Through these actions, the simple pleasures of life return. Sleeping through the night without worrying about a ringing phone. Going out for dinner without being interrupted by a time sensitive care situation. Returning to participating in social activities and outings with friends. Reading the newspaper. Soaking in the tub. Caregiving chaos becomes less frequent and may even disappear.

It is possible for all of the things we took for granted in life and lost during the role of caregiving to return. Free time for hobbies, spending time with friends, reading a book, sleeping late on the weekends, and cooking a favorite meal can all return to be part of our daily life. But only if we act, think positive, value ourselves, learn and collaborate.

Whether you are a professional working in health, caregiving, financial or legal planning or a family caregiver reading this article, recognize the benefits of collaboration. Work together to ensure positive care situations for aging parents, spouses, and other family members. Seek out solutions Avoid being frozen and unable to move forward.

Imagine yourself looking back at what seemed to be dreadful and unpleasant situations and be able to say “it wasn’t that bad.” You’ll see that you’ve come a long way.

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Pamela D. Wilson, MS, BS/BA, CG, CSA, a National Certified Guardian and Certified Senior Advisor, is a caregiving and elder care expert, advocate, and speaker. Pamela offers family caregivers programming and support to navigate the challenges of providing, navigating, and planning for care. She guides professionals practicing in estate planning, elder and probate law, and financial planning to create plans to address unexpected concerns identified in her past role as a professional fiduciary. Healthcare professionals are supported by Pamela’s expertise to increase responsiveness and sensitivity to the extensive range of care challenges faced by care recipients and caregivers.